A new treatment that targets a specific type of lung cancer has received
FDA approval. Alectinib has been approved in the US for the treatment
of patients with ALK (anaplastic lymphoma kinase)-positive non-small
cell lung cancer (NSCLC) whose disease had worsened after – or who could
not tolerate – treatment with crizotinib1.
Alectinib for ALK-positive NSCLC
An ALK (anaplastic lymphoma kinase) is a gene mutation that can occur in
various cancer cells, including lung cancer cells. ALK gene mutations
are present in about 5 % of patients with NSCLC.
Alectinib is an oral medication that blocks the activity of the ALK
protein, which may prevent NSCLC cells from growing and spreading1.
Its approval provides a new therapy for patients who would have had few
treatment options if their disease stopped responding to treatment with
crizotinib. Furthermore, clinical trials provide evidence of an effect
on tumours that had spread to the brain1, which is common in ALK-positive NSCLC metastatic patients2.
If you live outside the US you can order alectinib at buycancermedicine.com when a doctor’s prescription is provided.
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We start new medications and treatments with the greatest of
intentions, but everyday life often has other plans. Remembering to take
meds and monitor their effects is an important responsibility for every
patient. But we all have those oops moments where we can’t quite
remember if it was yesterday that we washed down that pill after
breakfast or today. And that’s before we factor in whether we should be
taking them with food in the first place. Patient adherence, or managing
to remember to take those pesky pills and how they should be taken, is a
huge concern in the healthcare community. The simple fact is, drugs
don’t work if patients don’t take them and it’s estimated that 50% of
the 2 billion prescriptions filled each year are not taken correctly
[1]. Lucky for us, there’s an app for that, there are hundreds of
medication reminder apps, in fact. Here, we round-up our favorite six
that will help you avoid those oops days and stay on track with your
treatment.
Please note: nothing can replace the care of your clinician or
doctor. Please do not make changes to your treatment or schedules
without first consulting your healthcare providers. These apps are not
intended to diagnose or treat illness.
Taking medication isn’t a whole heap of fun, but that hasn’t stopped
the folks at Mango Health who have put a gaming spin on the conventional
reminder app with great success. The app features a schedule for
creating reminders, drug interaction warnings, refill alerts, and a
diary. But the real standout is the gamified points system; take your
medication and earn points, earn enough and you could win prizes. Yes,
we thought that might get your attention.
Life doesn’t stop just because your phone is doing the marimba.
Instead of choosing a precise minute of the day at which you’d like to
take your pills, Round allows you to choose a ‘reminder window’ and
gently nudges you throughout that hour (or so) until you tell it to
stop. Add to that it’s eye-wateringly beautiful design and simple
interface and you’ve got the perfect app for minimalists.
MyMeds can send you reminders by email and text, as well as push
notifications, which is handy if you’d rather receive info in your
inbox. It also has a feature that helps you become more informed about
why you are on certain treatments (and you know we like patients to be
informed). But perhaps the biggest plus is that it enables you to invite
family, friends and your healthcare team to view and help with your
progress. We can see a lot of people finding that level of support
hugely beneficial to their day-to-day health routine.
Another app that hopes to motivate adherence and keep patients
involved in their own care by informing them, MediSafe can be integrated
with HealthKit (iPhone) to keep track of blood glucose, blood pressure,
and weight and can even save reports as PDFs. The app also helps you
discover more about food and drug interactions, something the general
public is not so well informed of [2]. There’s a playful side to this
offering too, though. How about setting your alert tones so Darth Vader
or Austin Powers tell you when to take your meds? Yeah, baby.
A pretty run-of-the-mill reminder, Dosecast’s standout feature is its
live sync function. Download the app to all your devices and each one
will be kept up-to-date instantly. So tell your tablet that you took
your tablets, and you won’t be reminded by your mobile. Tech addicts,
you are served.
If you’ve done any kind of online research into treatments, you’ve
probably found yourself on Drugs.com, the internet’s most visited
independent medicine information site. So it won’t surprise you that
Drugs.com’s reminder app makes use of its widely trusted database to
help you manage any combination medications, vitamins, and supplements.
The in-app pin lock will appeal to anyone who is concerned about
privacy.
Food-Drug Interactions PMC – Oman Medical Journal, Rabia Bushra, Nousheen Aslam, and Arshad Yar Khan, 2011 Mar; 26(2): 77–83. doi: 10.5001/omj.2011.21
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There
were no more treatments left for Danny van Brenk in the Netherlands.
His cancer had metastasised and untreatable. They could treat him in New
York, however. But the treatments are expensive.
The first diagnosis came in the winter and the last week of spring
Danny van Brenk was told he only had a few more months to live. Bile
duct cancer in the liver, with metastases. No more treatment options.
But Danny (33), father of two little kids, didn’t give up. He contacted
one of the best cancer hospitals of the world and was told that he could
be treated there, although the costs wouldn’t be reimbursed, and he
succeeded in raising over 150.000 euros in 10 days with crowdfunding. At
the end of the summer, he was operated in New York.
One year after this operation, Danny looks happy and fit: he gained
30 pounds, just came back from New York, recovering from a new
chemotherapy. He pulls his shirt up: next to his belly button, just
under his skin, is a small pump, that every two months for two weeks
pumps high doses of chemotherapy through the arteries of his liver. This
way more of the chemotherapy is delivered to the tumour than with
normal chemotherapy. But the effect of this treatment for his specific
type of cancer, which is a rare cancer, has not yet been proven, and
therefore the insurance won’t reimburse a penny. The operation, the
scans, the investigations, the medical support, the tickets to New York,
the stay there, and that every month again: He calculated that for the
first two years he would need 300,000 euros.
An online auction was set up, friends organised a charity run,
hairdressers worked a day for him, his old soccer club, GVVV, organised a
charity match, their rivals, Spakenburg, also collected several
thousand euros, and strangers donated money, lots of money. And, as
astonished as he was by all this, Danny van Brenk was able to prolong
the few months he had left to a couple of years and maybe even more.
This is translated from an article published in the Dutch
newspaper De Volkskrant on Saturday 8 August 2015. This is about one of
our very first patients, Danny van Brenk. If you are interested in the
whole article, please click here.
*Update: Danny passed away in 2017 after having spent valuable additional years with his family.
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Promising news on the immunotherapies front! Impressive results have
been published last week regarding two new immunotherapies,
pembrolizumab and nivolumab, treating patients diagnosed with melanoma,
non-small cell lung cancer and renal cancer.
Data from phase 3 trials for the breakthrough immunotherapies
pembrolizumab and nivolumab have shown exiting results for the treatment
of melanoma, non-small cell lung cancer and renal cancer. The data was
presented last week at the convention of the American Society of
Clinical Oncology (ASCO) 2015.
Many media have reported about these results, a short overview can be found below:
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On June 26, 2015, the regulatory agency of Japan, the Pharmaceutical
and Medical Device Agency (PMDA), has granted marketing approval for
the use of Edaravone for the treatment of ALS in Japan.
The press release published by Mitsubishi Tanabe Pharma Corporation on June 26, 2015, reads the following:
“Mitsubishi Tanabe Pharma Corporation announced today that it has
received approval of a partial change in manufacturing and marketing
approval items related to an additional indication and dosage/usage for
Amyotrophic Lateral Sclerosis (ALS) for Edaravone inj. 30mg and
Edaravone bag for I.V. infusion 30mg in Japan.
Edaravone is a free-radical scavenger discovered by Mitsubishi Tanabe
Pharma. In 2001, Mitsubishi Tanabe Pharma commenced clinical trials in
Japan involving ALS patients. A series of clinical trials demonstrated
that patients receiving Edaravone showed less functional loss than
patients receiving a placebo.
Edaravone is not yet approved to treat ALS in other countries than Japan. However, Edaravone was already approved in Japan as a treatment of acute ischemic stroke. Edaravone is already available via Buycancermedicine, and can be acquired when a doctor’s prescription is provided.
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Yesterday Mitsubishi Tanabe Pharma America (MTPA) announcedthat Radicava™ (edaravone), a prescription medicine indicated for the treatment of amyotrophic lateral sclerosis (ALS) approved by the FDAon May 5, 2017, is now available in many parts of the United States.
The first ALS treatment to receive FDA approval in 22 years, the treatment has been shown in clinical trials to slow decline in the loss physical function.
I live in the US and have ALS. How can I access Radicava (edaravone)?
Edaravone requires a prescription from a physician. If you are
interested in receiving this treatment, here are the steps to take as
outlined by MTPA:
1. Chat with your physician about whether edaravone might be suitable
for you. If it is, they’ll provide you with a prescription.
2. As soon as you receive a prescription, contact Searchlight Support by
calling 844-SRCHLGT (844-772-4548). Searchlight Support is a program
developed by MPTA to assist you with personal case management,
reimbursement support, and once you start treatment, 24/7 product
support. MPTA have created a program in which eligible patients may
receive Radicava at no charge from MTPA while their insurance is
assessing whether they will cover the cost of the medicine. MTPA have
also created a program that provides Radicava at no charge if you do not
have insurance and meet income and certain other requirements.
Can I still import edaravone into the US from Japan?
US patients are legally able to purchase and import medicines from overseas that have not yet been approved and/or are not yet available in the US. If you try to access Radicava in the US and find that it’s still not available to you for some reason in your specific location, you may still be able to import edaravone (Radicut) from Japan on a named patient individual import basis until Radicava is available in your region. For more information contact . Your prescribing physician would need to state in writing that Radicava (edarvone) is not yet available in your region.
I don’t live in the US, Japan or South Korea. Can I still import edaravone into my country?
Yes! The FDA approval and availability of Radicava (edaravone) only affects US patients’ ability to import edaravone into the US. If you live outside the US you will still be able to import edaravone from Japan which was approved there under the name of Radicut over two years ago, via your country’s personal importation scheme.
What’s the difference between “Radicava” and “Radicut”?
Radicut and Radicava are simply different country brand names for the
exact same active ingredient, edaravone, produced by the original
manufacturer, Mitsubishi Tanabe Pharmaceuticals. Radicutis the brand name for the Japanese market, which was approved in Japan in 2015; Radicavais the brand name for the US market, which was approved by the FDA on May 5, 2017.
Radicava comes in the form of ready-to-use 30 mg/100 ml intravenous bags, making it easier for this medicine to be administered to patients who are treated at home.
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Gaining a deeper understanding of Ocrevus (ocrelizumab) for the treatment of MS through clinical trials
UPDATED – 8 November 2017
It wasn’t too long ago when there was little advancement in the
treatment of multiple sclerosis (MS). But now, treatment of MS has
radically changed, particularly with the latest approvals of Ocrevus (ocrelizumab) in
the US, Australia and Canada for the treatment of relapsing MS. The
drug is also the first approved treatment for primary progressive MS
(PPMS).
Gaining more information on Ocrevus (ocrelizumab) for the treatment of both MS and PPMS
The efficacy of ocrelizumab for the treatment of relapsing forms of
MS was shown in two clinical trials where 1,656 patients were treated
for 96 weeks. Both studies compared ocrelizumab to another MS drug,
Rebif (interferon beta-1a). In both studies, the patients receiving
ocrelizumab had reduced relapse rates and reduced worsening of
disability compared to Rebif.[1]
In a study for PPMS, 732 patients were treated for at least 120
weeks, those receiving ocrelizumab treatment showed a decrease in
disability progression compared to placebo.[1]
Ocrelizumab treatment is administered by a healthcare provider using a
needle in a vein known as intravenous infusion. The first two infusions
are given 2 weeks apart followed by an infusion every 6 months.[2]
For primary progressive MS patients, ocrelizumab is currently the
only approved treatment and is therefore, the main drug of choice for
many.
But the research on this treatment is far from over as several
clinical trials sponsored by its developer Genentech or parent company
Roche, are ongoing to find out its true potential.
Multiple Sclerosis News Todayspoke
indepthly to Dr. Hideki Garren — Group Medical Director of Ocrelizumab
for Genentech (Roche) — about new understandings that these clinical
trials might offer. We have summarised the trials below.
Ocrevus (ocrelizumab)among patients who failed to respond to an earlier disease-modifying treatment
Two ongoing large Phase III trials (where new treatments are
compared with the best currently available treatment) taking place in
the US (NCT02637856), and Europe and Australia (NCT02861014),
will investigate the safety and effectiveness of ocrelizumab among
patients who failed to respond to an earlier disease-modifying
treatment.
Patients will receive a maximum of four treatment rounds, and the
trial will measure the percentage of participants who do not experience a
relapse, new or enlarged lesions, or disability progression at 24
weeks.
Multiple Sclerosis News Today reported
that the enrolment for the trials is “progressing extremely well.” The
European/Australian trial data is expected by December 2020, while the
US trial will be completed in 2019.
Early-stage relapsing investigation
Another Phase III trial sponsored by Roche (NCT03085810)
will evaluate the effectiveness of ocrelizumab on patients in the early
stages of relapsing-remitting MS by measuring the progression of
disability, and disease activity over a four-year period.
The aim of the trial is to expand on the results of the Phase III
OPERA trial which demonstrated the benefits of ocrelizumab for
early-stage relapsing patients. The trial will gather further data on
this group, with over 600 patients with an MS diagnoses of three years
or less, and will mainly focus on disease progression, relapse rates
among other outcome measures such as lesion developments, and
disability.
The finalised trial data is expected in 2022.
Vaccination study
The use of vaccinations is not recommended as per the
prescription label as ocrelizumab works by depleting CD20-type B-cells,
which are also known to play a role in the immune system’s response to a
vaccination.
It is not certain yet if vaccines lose their ability to trigger an immune response, but the Phase III clinical trial (NCT0255868) based in the US and Canada aims to explore this relationship.
The trial will focus on four vaccines, with the focal point being the
tetanus vaccine. Although the study began in 2015 and is no longer
recruiting, the final trial results will not be completed until 2022.
How Ocrevus (ocrelizumab) works
While these trials focus on the drug’s effects in specific patient
groups, one main study aims to create a deeper understanding of the
interaction between ocrelizumab and the disease.
The open-label Phase III trial (NCT02688985)
will examine, for the first time, patient’s cerebrospinal fluid, a body
fluid found in the brain and spinal cord. The trial will recruit 104
patients with both relapsing and primary progressive disease across 19
locations including the US, Germany and Sweden.
This trial will be the first to measure cerebrospinal fluid in order
to assess the processes taking place in the brain. It also aims to
evaluate the presence of anti-drug antibodies which have the potential
to prevent ocrelizumab from doing its job.
The trial requires patients to undergo two spinal taps, and the study is expected to be completed by September 2018.
Real patient stories about the results of using Ocrevus
Reported by Multiple Sclerosis News Today, two American patients
using Ocrevus have reported significant improvements. In the article
called Two Women with Different Forms of Multiple Sclerosis Call Ocrevus a Lifesaver it
is reported that two women MS sufferers both declare Ocrevus to “have
dramatically improved their lives.” One patient has the
relapsing-remitting form and the other has progressive multiple
sclerosis.
Deeper knowledge of treatment effects
It is through clinical trials that the long-term efficacy and
safety of ocrelizumab can be determined. These studies uncover
information and evidence to further understand the causes of MS, and how
to improve the development of innovative treatments for MS such as
ocrelizumab.
The finalised data of these trials will define ocrelizumab’s role within the MS treatment landscape. Buycancermedicine will ensure to update all details of these clinical trials as soon as they are published.
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Online counsellor Nicole Hind shares how to help our brains and bodies deal with a diagnosis
You’ve just received a shocking diagnosis. You’re reeling and
you aren’t sure what to do or how to take it in, let alone respond to
the news. Suddenly you’re being asked to take in enormous amounts of
information and make life-changing decisions. It’s expected, of course,
that you will have to follow treatment plans and you know you should get
on board right away, but you just can’t. You’re struggling and unable
to climb out of the hole and it’s just getting deeper.
It turns out that trauma diagnosis could very well be affecting a
large number of people, and it’s having an impact not only on our
emotional well being but on our entire wellness and treatment plans. This study found
that patients are far more likely to follow their doctor’s treatment
plan when they feel like he/she has really listened to them with empathy
and respect. And it seems this can be addressed right from the
beginning if we all better understand the impacts of diagnosis.
What is trauma (or Post Traumatic Stress Disorder- PTSD)?
Little is mentioned in the study of medicine about ‘diagnosis
trauma or ‘medical trauma’, however it can be understood as trauma a
person may experience at the diagnosis of a serious illness, and/or the
ongoing impact of dealing with a diagnosis.
The DSM V defines
trauma as ‘a direct personal experience of an event that involves
actual or threatened death or serious injury, with the response
involving fear, helplessness, or horror’ (p. 463). Dr Judith Herman, an
expert in trauma, would describe it, simply, as ‘a normal response to
abnormal circumstances’. However it doesn’t ‘feel’ very normal.
Trauma is a bit like a short-circuiting of the way the mind usually
sends messages around the brain. When we can’t totally make sense of
something – typically when we are in danger and we have no control over
the situation – the brain goes into hyper drive trying to ‘protect’ us,
sending adrenalin and cortisol (and additionally for women oxytocin)
flying around our bodies to get us to react, to get out of the crisis,
to reject what is happening.
Of course it is not possible to get out of a diagnosis situation.
What happens in the brain when trauma occurs?
The amygdala (the reptile brain where our instinct reactions
live and our stress responses come from) basically shuts off from our
pre-frontal cortex (where our thinking and logic live: where the ways we
make sense of the world are created over our lifetime as we form
memories). If we can’t fix the situation or come to some sort of
resolution around it, then we can be propelled into the reactive danger
zone constantly. This can have pretty major impacts the entire
functioning of your brain.
What does it feel like?
You might experience some kind of trauma when you first hear a
diagnosis. What it looks like can be numbness or emptiness, an inability
to take in information, to think clearly or make decisions, an
overwhelming sense of fear or even terror, a strong desire to run away,
to argue, a strong sense of being out of control, or somewhat weirdly to
touch someone. Or you can suddenly be accompanied by a number of
seemingly unrelated physical symptoms: heat in the face, excess energy,
tingling fingers or scalp, deep sick feeling in the stomach, tightness
across the chest, inner churnings.
Another presentation of trauma is that once you stop ‘the doing’ –
once everything practical is taken care of – a whole bunch of the above
symptoms can suddenly hit you. This can happen months or even years
later. The ongoing trauma of dealing with a diagnosis of a
life-threatening condition, or a later impact from the initial shock to
the system of the news can have a profound impact on your physical
wellbeing as well as your emotional and mental state.
In fact, prolonged exposure to trauma (referred to as C-PTSD, the C standing for Complex) can present in severe physical presentations: gut problems, heart conditions, back issues, headaches etc. It can also affect your ability to relate to other people, and influence your behaviour in ways you might not prefer.
Grief and Loss: what happens when you toss that in?
Grief and loss reactions are not just reserved for when a
person dies. When we experience a loss of any kind – including a loss of
a vision of the future – it can knock us for six. Basically our brains
like our bodies to be safe and secure. When it becomes apparent that we
cannot necessarily control that, a whole bunch of funny stuff can
happen. Insomnia moves in and interrupts your previously restful nights
sleep. Nightmares ruin your dreams.
I myself had a series of intense ‘flashes’ of people I loved dying in
horrible ways when I was going through a loss some time ago.
Experiences like this can be seemingly unrelated to your diagnosis, but
it’s important not to underestimate the power of our minds when it comes
to, in all it’s peculiar ways, protecting us and figuring things out.
It’s confusing and troubling and painful.
The last thing you need.
The first (or more accurately, second) thing that a medical
practitioner should be looking for. I don’t think it takes too much to
be human with each other, no matter what our profession. Grief and loss
reactions are not just reserved for when a person dies. When we
experience a loss of any kind – including a loss of a vision of the
future – it can knock us for six.
Just understanding diagnosis trauma might help doctors provide
more effective and supportive treatment, and patients to be slightly
less terrified when dealing with a diagnosis.
What can I do about Medical Trauma?
If you think you or your loved ones may be experiencing some
kind of trauma or are struggling to deal with a diagnosis, here are some
ways to think and talk about what is happening:
Cross-examine the diagnosis
It may seem obvious, but allow yourself to spend some time
reflecting on the meaning of your experience. If there is a sense of
loss, what does this loss speak to about what is important in your life?
Is there a way to hold onto what is important even under the strain of
illness? When the intensity of The Diagnosis is present, what does it
have you doing (or not doing)? Are you ok or not ok with that? Does
anything become more available to you when The Diagnosis is shrunk a
little in your mind?
Love yourself through another’s eyes
When you genuinely look at yourself through a specific loved
ones’ eyes what do you see? Remind yourself of who you are and what you
mean to the people in your life. How are you going to hold onto your
identity (and ask others to help you do that) in times of great pressure
when it seems little is available?
Take a position- stand up for something- rather than ‘fighting’ it
We often expect people to ‘fight’ illness. In fact, we demand
it. We say they ‘need to stay strong’ and describe it as ‘losing the
fight’ when someone is dying, or if someone chooses to stop treatment we
might say they’ve ‘given up hope’. But what does ‘standing up for Hope’
look like? Does it have to look the same for everybody? Is it possible
to find other things to stand up for, ways of being that don’t involve
fighting metaphors: can you see yourself as ‘standing up for love’ or
‘taking a position against an inhuman culture’? Can you make peace with a
diagnosis without ‘giving up’ on yourself? If so, what does that look
like?
Spend some time with Yourself
We can find ways to honour the parts of ourselves and others
that are not specific to illness or diagnosis: Asking ‘Who Am I’ as a
person, as someone who is part of a bigger picture, who contributes in
any way that you can to this society and your people. Maintaining and
actually growing your sense of identity via what is meaningful to you
can help bring together what becomes fragmented by trauma.
Can you make peace with a diagnosis without ‘giving up’ on yourself? If so, what does that look like?
Be there for your loved one with a diagnosis. Just Be.
If you are supporting someone who has received a diagnosis,
don’t launch into advice on how to feel better. Instead, offer your
acceptance of what they are feeling. Acknowledgment. Support. It can be
hard to sit with someone else’s pain and just let it be, but there is
little more powerfully human than simply being with one another.
Are there practical things I can do to reduce the impacts of trauma?
By feeling more in control of your body, safer and more
connected there is a lot of research to show that there is a positive,
physical impact on the brain. In particular if you can calm anxiety you
create the conditions that allow neural passages to open up, send
messages, and possibly even regrow.
Recently I saw Dr Gregory Willis of The Bronowski Institute speak. He is an expert in Parkinson’s disease. With over 20 years of medical and scientific research and
literally thousands of patients he is showing that if you treat the
depression and anxiety that comes along with the brain changes +
diagnosis trauma of Parkinson’s then you reduce the need for high levels
of medication (research not embraced by many pharmaceutical companies).
What THAT means is a longer and more fulfilling life with Parkinson’s
and less chance of overdose. He supports the use of light retina
treatment and anxiety-reducing practices alongside medication in
treatment. Those anxiety-reducing practices are things like:
Mindfulness techniques
Mindfulness can assist to put you ‘in the moment’ and not
trailing off on thought processes that are not serving you. You can
practice with a professional or via a podcast or alongside a video on
YouTube.
Deep breathing
Many of my own clients find controlled techniques such as 4262
breathing help them sleep. Bear in mind the out breath is the calming
one, so it’s breathe in for 4, hold for 2, out for 6, hold for 2, repeat
(adjust slightly to your own breathing rhythms, just making sure the
out breath is longer).
Specialised yoga classes for addressing trauma
There are also yoga classes for people who have illnesses and
the teacher can adjust practice in accordance with your needs.
Additionally it can be a safe space to connect with others who
understand your story.
Because guess what? You are allowed to be: Furious. Confused. Terrified. Sorrowful. Or even Numb.
Soothe your emotions creatively
As a matter of priority, make time for any kind of activity you
find soothing, such as journaling, art, making wooden furniture,
cycling…or embrace the opposite of soothing by using the activity to
express your emotions. Because guess what? You are allowed to be:
Furious. Confused. Terrified. Sorrowful. Or even Numb. We have this
tendency to be frightened of strong emotions. We shut them down: in each
other, our children and ourselves. But it’s not healthy. If you’re not a
talker, or you don’t buy into all this sharing nonsense, then finding
some way to express yourself is vital for your health. When you pay
attention to your body, when to soothe and when to express becomes much
more clear.
Feeling that they had to be ‘strong’ in only one way
(e.g.: silence by not ‘burdening others’) is actually one of the biggest
regrets most people I work with share, at some time of their lives.
Talk about it, share it, reflect on what it means
On a similar note, finding ways to express your emotions,
finding someone who can listen to them, handle them, places to yell and
scream and cry can be very important for healing trauma and also for a
strong brain. If this frightens you, it might help to ask yourself: Why
do I feel so strongly about this diagnosis? What has been taken away
from me, and why do I hold it so dearly? What am I standing up for when I
let my emotions be, as they are, without attacking anyone or myself for
feeling this way?
It’s OK to be vulnerable
Lastly, when it comes to diagnosis, or anything in life, it’s
ok to be vulnerable and ask for help. Feeling that they had to be
‘strong’ in only one way (e.g.: silence by not ‘burdening others’) is
actually one of the biggest regrets most people I work with share, at
some time of their lives. We all struggle to get more of what we need
from others, so practicing at it, even though it doesn’t feel natural,
is an art. You’ll often be surprised about how much more you get from
folks when you bravely share your own vulnerability.
Dr Judith Herman herself says that trauma recovery can only take
place within the context of relationship. If we don’t see ourselves or
each other as worthy of having a say in relationships: with friends,
family and our doctor who is making life-changing decisions for us, then
we will, as a society confronting life threatening diagnoses every day,
continue to struggle with this vital understanding of the relationship
between the body, the mind and ultimately our own wellness. Dealing with
a diagnosis can be traumatic, but it doesn’t have to be.
Nicole Hind is
an Australian Online Counsellor who fiercely believes that we all have
stories that deserve to be wrenched out of the shadows, increase a sense
of hope, of self-worth, and provide clarity on how to approach
challenges for the rest of our lives. You can get in touch with her or
read more of her blogs at www.unveiledstories.com.
https://buycancermedicine.com/wp-content/uploads/2019/08/dealing_with_a_diagnosis.jpg6671000Buy Cancer Medicinehttps://buycancermedicine.com/wp-content/uploads/2019/06/LogoMakr_71uqPT.pngBuy Cancer Medicine2019-08-27 08:30:192019-08-27 08:32:08Dealing with a Diagnosis
Suggestions from cancer survivors and their children
Telling your child that you have cancer can be a very daunting task –
it can be difficult to know how much or little to say, and when to say
it. Thankfully these days there are plenty of online resources written
by health and child specialists.
Professional advice aside, it can also be nice to hear firsthand from
other parents – how did they to go about it? What worked for their
family, and what would they do differently?
Here are some thoughts, reflections and suggestions from other
parents in the online world who have already braved the task of telling
their children about their cancer diagnosis:
‘Give your child the freedom to give cancer their own name’
Ann Marie Otis talks
about how her four year old son Jack referred to her diagnosis
as ‘stupid dumb breast cancer’ (which also inspired the name of her website).
These words, usually considered naughty in their household, were in
this instance allowed because Otis felt it was important that Jack be
free to articulate himself and his feelings in his own way.
‘Consider waiting until you have a treatment plan’
Gabby Spear and
her husband decided to wait to tell her three and six year old until a
month after her diagnosis because they wanted be able to have a clear
plan in place first. They wanted to be able to say, “this is what I
have, this is what it means, and this is what we are going to do about
it.”
‘Involveyour child’s school’
Australian bloggerJo Wallaceapproached her seven year old Charlie’s teacher after being diagnosed with stage 4 cervical cancer. They ended up inviting her doctor to talk about cancer to Charlie’s entire class; about what it is and isn’t, about how it isn’t contagious, and if how detected early, it can be treated. This not only empowered the school community to support Charlie – it also opened up the opportunity for other children to talk about cancer and played an important role in demystifying the disease for them as well.
‘Keep some things normal’
WhenJen Singer asked
her two sons (eight and ten years old at the time) what they had found
helpful during her lymphoma, they said that hanging out with their usual
friends had been meaningful, because they felt like families whose
homes they had never been to before tried hard to be extra nice, and it
made them feel pitied.
‘Let your child help out if they want to’
Pancreatic cancer survivorTonia Smith recommends
giving your children chores that they can do around the house because
it can help them feel like they have control over the situation, and
doing something to help you fight your disease.
‘Don’t censor your child’
April Steams shares
how her four year old told everyone she met that her mother had cancer.
From people at the park, to clerks at the grocery store, to other moms
at the library, “she wasn’t looking for sympathy – she simply needed to
talk about it.”
‘It’s OK for your child to see you vulnerable’
Breast cancer survivor and former educator Nancy Stordahl feels
that overprotecting children could be more harmful in the long run.
Allowing your children to see your vulnerable side from time to time can
help them to feel like it’s OK to express their own feelings of sadness
and frustration.
And finally…
‘Remember that every child is different’
As with every child, there is no one size fits all approach, and you as their parent know your child best.Emma Young told each of her children of varying ages different things:“You have to do what feels right for you and your family, there’s never a textbook answer.”
Parenting with cancer – A website with resources and articles written for parents with cancer by parents who are cancer survivors themselves.
Canteen –
This Australian organisation has a specific section on their website
especially for teenagers whose parents have been diagnosed with cancer,
with easy to understand information.
Canteen – This Australian organisation has a specific section on their website especially for teenagers whose parents have been diagnosed with cancer, with easy to understand information.
https://buycancermedicine.com/wp-content/uploads/2019/08/telling_your_child_you_have_cancer.jpg470700Buy Cancer Medicinehttps://buycancermedicine.com/wp-content/uploads/2019/06/LogoMakr_71uqPT.pngBuy Cancer Medicine2019-08-27 08:25:242019-08-27 08:25:58Telling your child you have cancer
My friend’s mother Jill* was diagnosed with cancer a few years ago.
Recently she told me that her mother was receiving further treatment in
Queensland. It was a fairly new treatment that wasn’t on offer yet in
her home state. “It’s really helping her,” she told me. “I’m so glad
that we found out about it.”
Thankfully Jill* only has to travel a few hours every couple of
months, and her husband and two daughters have the capacity to take time
off of work, taking turns to travel with Jill and be by her side to
provide care and support.
But what if the medicine had only been available overseas—a long 30
hour plane trip away? Or what if the drug existed, but wasn’t available
to her at all?
This scenario is the very reason for buycancermedicine existence. We live in an age where you can hop online to order a new brand of lipstick if it hasn’t been released yet in your country. It seems nonsensical that you have to wait months, even years for a FDA approved, potentially live-saving medication to become available in Australia.
Our aim is to put patients in the driver’s seat. If a patient decides
to explore new pathways and there is a new, well-reviewed, approved
innovative treatment out there that could help them, we want to help
them to access it; and as quickly as possible. It can be difficult to
learn about the latest treatments available, all in the one place. We
want to bridge this gap as well; to be a platform that doctors, health
providers and patients can go to for information and access.
This month, thousands around the world will gather for various breakfasts and events to raise awareness about the most common cancer affecting women: breast cancer. buycancermedicine honours those whose lives were tragically cut short by breast cancer, and stand in solidarity with those who are fighting this devastating disease.
*Name changed to preserve privacy.
DISCLAIMER: Nothing can replace the care of your clinician or doctor.
Please do not make changes to your treatment or schedules without first
consulting your healthcare providers. This article is not intended to
diagnose or treat illness.
https://buycancermedicine.com/wp-content/uploads/2019/08/hop-online.jpg500960Buy Cancer Medicinehttps://buycancermedicine.com/wp-content/uploads/2019/06/LogoMakr_71uqPT.pngBuy Cancer Medicine2019-08-27 08:21:232019-08-27 08:21:25For those who are searching: hop online
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